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Local Hero with rare disease to be honored at 2018 MG Walk at Bear Creek Pioneers Park

November 9, 2018

When Meena Dhanjal Outlaw one day suddenly couldn’t swallow a “very ripe” banana, she and husband knew something was terribly wrong.

The author and freelance writer had an onset of strange symptoms: no vision, difficulty swallowing, chewing, slurring words and trouble breathing. Her husband David Outlaw rushed her to the emergency room where she spent several months in acute care being treated for a rare neuromuscular disorder called myasthenia gravis.

Meena Outlaw, a Sugarland resident who was born in Wimbledon, still lives with the incurable disease that she discovered she had in 2014; and will be honored at the upcoming 2018 Houston MG Walk happening on Saturday, Nov. 17 as the MG Walk Local Hero at Bear Creek Pioneers Park in Houston, said Carline Czaja, a member of the MG Walk Team.

The National MG Walk Campaign is marking its 8th year of raising funds and awareness for those living with myasthenia gravis, having raised $5.5 million since the first Walks back in 2011.

According to the National Institute of Neurological Disorders and Stroke, myasthenia gravis “causes weakness in the skeletal muscles, which are responsible for breathing and moving parts of the body, including the arms and legs.” It also causes weakness in muscles that control eye and eyelid movement and neck and limb movements, according to the NINDS.

Dr. Thy Nguyen, associate professor of neurology, who specializes in movement disorders, at McGovern Medical School at UTHealth, said patients with myasthenia gravis can manage their lives with treatment.

“They can live a normal life,” Nguyen said. “Your symptoms can be managed with medications and treatments.”

The disease is rare, and the numbers differ, but the prevalence of myasthenia gravis is about 10 to 20 per 100,000 people, Nguyen said, adding that it’s estimated to have around 65,000 cases in the United States.

“These numbers may be a little bit of an underestimation because patients maybe going through the evaluation and haven’t been given the diagnosis yet and we’re also developing new ways to find the diagnosis,” she said.

When doctors first began describing and treating the disease in the 1960s, the mortality rate was about 40 percent, but now it is less than five percent, Nguyen said, adding that intensive care treatment has really improved in the past five decades.

“It is an autoimmune disease, so that means your body got confused and started attacking the communication point between the nerve and the muscle,” Nguyen said. “We use treatments for autoimmune diseases like steroids to treat people with myasthenia gravis.”

Meena Outlaw, who also has an unrelated spinal cord injury, said she was a “classic case” of myasthenia gravis, according to her doctors. After learning how to become independent when her spinal cord injury left her unable to walk, she was suddenly thrust into a new health predicament, which left her unable to move.

“It’s not just fear that goes through you. It’s just everything else,” Meena Outlaw said. “I thought I was very much over having crises in my life when it came to my health, so when my myasthenia had occurred, it really threw me back. This strong person that I was, I could feel myself emotionally crumbling.”

It was around that time where she began desperately searching for answers and when she became involved with the Houston myasthenia gravis support group, which was founded by Rachel Higgins and has roughly about 170 members. Higgins herself was diagnosed in 2009.

“We realized the significance of having the support group for us, which was huge,” Higgins said. “To be able to go and sit amongst other families, who are living with the same challenges we were, to experience the same fears that we were…it was invaluable to go sit amongst men and women, families, patients, doctors and learn what this was. Yes, this is a manageable disease.”

The 2018 MG Walk takes place on Saturday, Nov. 17 at Bear Creek Pioneers Park 3535 War Memorial Drive. Check-in / registration starts at 9 a.m. and the walk starts at 10 a.m. For more information on MG, visit www.myasthenia.org.

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